Living With Dementia

“Who Will I Be When I Die?” by Christine Bryden is a personal account of living with dementia. Follow Christine’s story and uncover how the disease progressed over the years, and how she’s doing today.

Inside the Undiagnosed Disease Program, the National Institute of Health's real-life version of "Hou...

Christine Bryden was forty-six years old when she was diagnosed with dementia. Who Will I Be When I Die?(Jessica Kingsley Publishers, 2012) is a written account of her emotional, physical and spiritual journey in the three years immediately following. While offering first-hand insights into how it feels to gradually lose the ability to undertake tasks most people take for granted, this account of living with dementia is told with positivity, strength and the deep sense that life continues to have purpose and meaning. The following excerpt is taken from Chapter 1, “I’m too young!”

The neurologist with his back towards me, looking at my scans, said, ‘Your brain is like that of a much older person, showing signs of marked atrophy, particularly at the front. It’s consistent with Alzheimer’s.’

He looked away from the scans for a moment, and then said, ‘You shouldn’t be in any responsible position. You must retire as soon as possible.’

I felt as if time had stood still — surely this wasn’t happening to me. I had to rush away in a minute and chair a meeting back at work, and I had moved house over the weekend and was still unpacking and sorting out.

I must have misheard — he was mistaken — the scans maybe had got mixed up with someone else’s… ‘You’re joking — I’m too young to get Alzheimer’s!’

I was only forty-six — old by my daughters’ reckoning, but surely far too young to get an old people’s disease like Alzheimer’s. Any rate, I wasn’t forgetful, just stressed out — with migraines and getting a little confused every now and then — taking the wrong turn a few times surely didn’t mean I was getting senile!

The specialist sat down, leaning back on his chair with his hands behind his head and, with what seemed like almost a touch of pride in his voice, he said: ‘I’ve diagnosed a young mother of thirty with Alzheimer’s. I’ve seen diplomats, lawyers, judges retire for the same reason. You really must take action now to retire on medical grounds.’

His bow tie caught my attention — jauntily poised above his crisp white chest. I needed something to focus on, something real to make sure this wasn’t all a dream. It was neatly tied, not a clip-on, I was sure, and had quite a subtle pattern for something as ostentatious as a bow tie.

He glanced at the scans again. ‘It is not likely to be Pick’s, as the loss would then be all in the frontal lobes, and although you’ve got damage there, you’ve also got generalised atrophy all through, and enlarged ventricles at the centre. I’d like you to have psychometric tests done soon, too.’

‘Er…how long will it be before I…er…um …’ I stuttered.

‘Until you become demented? Oh, about five years I expect,’ answered the specialist, breezily.

The world seemed quite unreal as I walked to my car, as if I were in a dream and soon would wake up to my normal busy life of working in the office and at home every day of the week — fitting in my three girls, shopping, cooking, cleaning, in between. Being a single mum certainly was stressful, and I had just taken out a six-figure mortgage to buy a townhouse — and we had just moved in that weekend.

It was a crystal-clear, crisp autumn Monday morning. The sky was a deep blue, with just a few powdery clouds adrift high above. The trees were showing their beautiful autumn copperbronzes and eucalypt grey-greens. The sky was huge — stretched out across Canberra and etched around with the soft blue-green mountain ranges in the hazy distance. How could all this beauty exist out here, when all was turmoil inside my head?

My mortgage — what would happen if I retired? Could I still afford it? This had all happened too soon after taking out the mortgage for my insurance to be valid! This at least was a concrete thing to work on. Yes, my first stop had to be the credit union. I drove around the calm deep blue lake, fringed with trembling golden poplars, and drank in the scenery as a balm to calm my mounting anxiety. The credit union manager was kind and helpful, seeing my tension and responding to my need. He took all the details, and offered to help in any way, such as in any financial advice I might need.

I walked back outside into the sunshine, getting into the car and filling my mind with the relative security of today’s work schedule. I drove to the office with only a few moments to spare before walking into the conference room to chair an important meeting. I felt remote from proceedings, struggling to keep focused on the task at hand, and getting the outcomes we had sought.

Margaret, my personal assistant and friend, was a tower of strength. She came into my office, after the meeting, shutting the door behind her. ‘How did it go at the doctor today?’ Tears welled up in her eyes as I told her, but we both struggled to keep our emotions under control, as we had a lot of immediate actions to take. I was obviously in no fit state to cope, and would be seeing my family doctor later that day. I needed to be freed up from as much as possible over the next few days, so that I could have meetings with personnel, senior staff and with the head of our department. The reactions at each of these meetings were similar — disbelief, overwhelming concern and tremendous support.

My family doctor was very concerned, when I saw her that afternoon. She was appalled at the callous attitude of the specialist, and clearly very concerned for me. She got on the phone while I was in her surgery, and managed to get me in to see a specialist in Sydney in eight days’ time, to seek a second opinion. She firmly recommended that I not drive there from Canberra, and that I should take immediate sick leave for three weeks. For once in my life I agreed to some time off work. I needed some space to deal with all this.

Those eight days were a nightmare, but at least I had a complete household of boxes to sort out after our move. I unpacked boxes, moved furniture, put up pictures, cleaned…anything to avoid thinking. Even my prayers were confused, clutching for God as a drowning man might desperately fumble around for driftwood. But unlike driftwood, God was — and is — a rock and a tower of strength.

I asked my friends Maureen and Clare to pray for me, and invited Maureen, who had been my neighbour years ago in Sydney (before either of us had become Christians, and while both of us were trying to maintain the public appearance of a normal marriage while we both were being abused by our husbands behind closed doors), to travel with me on the bus to Sydney.

I arranged to see my rector, Chris, and his wife, Kathryn (a nurse) and appeared at their door on a crisply cold dark evening, armed with scans, with an absolute conviction that whatever was going to come out of all this, it would be to God’s glory. I sank into their blissfully comfortable easy chair, and talked. They listened, and then prayed. To my surprise and delight, Chris anointed me with oil — not a liquid cooking oil, as I had imagined, but a delicately fragrant ointment out of a tiny screwtop jar.

I drove from their house — even delighting in the colours of the traffic lights, and almost tasting the beauty of the clear dark sky, lit with stars and a tiny piece of moon. I was singing at the top of my voice, and my spiritual and emotional batteries had been charged up enough to last me the next few days up to the bus trip.

I felt physically sick, very tired and strung out, but the four-hour bus journey was a wonderful time of sharing with Maureen, who prayed and talked about where God was in all this. I left her at the bus station, and trundled my bag a few blocks up the hill to the hospital, where the specialist had arranged for me to have further tests and nuclear scans.

Lying on the scanning table I was emotionally drained and exhausted — it was probably one of the lowest points in my life, for despite its ups and downs, life had never before or since struck me down quite as low as this.

As I lay there, with the machine slowly clicking its way around my head, I had a powerful image — that I was not lying on the cold steel table but on a lush field of green soft grass, bathed in warm sunshine from above. But then as I looked closer, zooming in, each blade of grass came into view — the grass was made up of the uplifted fingers of all those praying for me. I quietly thanked God for the peace that this gave me.

After the scans, I trundled my bags back down the hill to Sydney’s central station and took a train to the suburbs. This area was my old stamping ground, and I felt comfortable amongst the familiar bustle of the streets of central Sydney. My eldest daughter, Ianthe, who was studying first-year Physiotherapy at the University of Sydney, met me at the train station and drove me back to her group house.

She sat me on her bed and brought me a plate of delicious pancakes, topped with creamy butter, fine sugar and cinnamon. Later that evening she uncorked a small bottle of rainforest-scented massage oil, and gently eased away the tensions so that I drifted into a peaceful and deep sleep — the first since the diagnosis.

I felt decidedly strengthened the next day, as we went back to the hospital for more tests and to meet with the new specialist.

What a difference this quietly spoken and immaculately groomed specialist was to make to my spirits. No irritating bow tie, but wearing a modest silver-coloured tie with a dark blue suit, he sat behind a desk in a small but comfortable office, listening, asking, rather than expressing immediate opinions and statements. He had examined all the results carefully and said it was too early to make a specific diagnosis, and that there were a number of curable diseases to be ruled out before accepting that I had early-onset Alzheimer’s.

‘You’ll need to have a psychometric test, but that’s best done when you are less stressed, perhaps in a few months’ time. In the meantime we need to get your migraines under control. It’s wrong for you to have to take such dangerous drugs simply to be able to continue to work. I recommend you take six months off work while we do further tests.’

Six months! I had hardly ever taken sick leave. I was never sick — or at least never admitted to any illness. I always turned up to work unless I simply was too sick to get out of bed. I’d gone to work with migraines, avoiding vomiting by the simple solution of not eating, and avoiding passing out from pain by taking massive doses of pain-killers.

Migraine is like the pain of childbirth in the head and the discomfort of food poisoning in the stomach — it’s about as similar to a headache as a knife stabbing might be to a pin-prick! The last few years of weekly migraines had taken more out of me than I cared to admit, and I had got to the point where the migraine would set in by Monday or Tuesday evening, to leave me by Saturday or Sunday. An existence — survival, not living!

But I felt relief. Now at last I could own up to feeling burntout, too exhausted to continue.

This excerpt has been reprinted with permission from Who Will I Be When I Die?, by Christine Bryden, published by Jessica Kingsley Publishers, 2012.